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Health-Correct, I am not a healthcare profession. I am a father of a PANDAS child that has seen multiple doctors and multiple different treatments over the past 1 1/2 years. Yes, we did try many meds. When I mentioned immunosuppressant, I was referring to something like rituximab and when I mentioned steroid bursts I was referring to something like Prednisone.
Don’t worry so much about the Cunningham panel. Most will not treat based off of that. What it may do is help with insurance when you get denials, if something came up on the test.
So don’t listen to anyone who tells you PANDAS is bogus. It’s as real as it gets. there are some kids who get marked improvement just from antibiotics alone (hard to say it was something else, when hallucinations, rages, anxiety, etc goes away after antibiotics if it was a psych issue it wouldn’t disappear so quick). In any case, the path/impact is different for each kid and treatment varies by provider. Each have their own antibiotics that they prefer to use. Some recommend Tonsil and adenoidectomy and some don’t. Many do steroid bursts, IVIG and plasmaphersis. (I have gone though all with my son). Some then go on to an immunosuppressant if that above doesn’t work.
Many families will tell you diet and homeopath has helped them tremendously, we did not try this route (so can’t tell you if it works or not)
Since I have gone though a lot of this, I tried to list my email in the previous thread, but I guess the moderator won’t allow that.
All,
My 7 year old son has PANDAS. The past year and half have been a very tumultuous time in my families life. While some kids have a very mild impact, some kids (like mine) can have a much bigger impact.The timing for this post is quite eerie. I decided this week that I want to start helping other families that are dealing with this. (I asked Hashem yesterday for a sign that I should take on this endeavor and today I see this post) While I know I won’t be able to do everything on my list below, I want to start talking to families that have kids with PANDAS. I want to see if there is any way I can start helping them (even if just giving them information), I want to see what areas do ppl most need help in, I want to see if they are willing to connect and talk to other families that are going through a similar thing and you can even let me know if you want to help me in my endeavor. Lastly, I am just trying to get an idea of how many families have kids with PANDAS in our communities, so it can help when I go talk to people, that this is impacting many families.
While there are many great Jewish organizations, There is a gap in getting help for families such as myself, since we do not “fit the requirement” for these organizations.
I know families need help in areas such as
1. Medical assistance
-initial pre-screen to help families determine if child potentially has PANS/PANDAS, what labs their doctor should be checking, general info etc..
-referrals to get people quickly into treating providers
-help fight insurance companies when treatment gets declined
2. Financial assistance
-many times families can’t afford to go to PANDAS treating doctors due to cost or don’t do recommended treatment due to cost
3. emotional assistance
-linking families up with other families that have gone or going through this
-support groups
-Education/awareness (many times kids are just told they have a psychiatric issues and go on many psych meds, when perhaps a few weeks of antibiotics would of totally healed them.) Many people just don’t have the awareness and never heard of PANS or PANDAS
-help with siblings/family since they are also being traumatized by this (big brother/big sister, maybe tickets to sports games etc.)
4. School assistance
-Help going through the IEP process and getting placed in a therapeutic school (may need advocates, lawyers etc..)Contact info is not allowed. Sorry
HI Winnie,
The timing from you post is from Hashem. I decided this week that I want to start something to help families dealing with PANDAS/PANS. It has been a ride (to say the least) the past year and a half with my son who has PANDAS (started when he was 6).
Edited – we cannot share your email, so sorry